Thursday, June 25, 2009

Pablo is sleeping. He's nuzzled up to Jo Ann's bosom, something he has done since the moment of his birth. To see Pablo and Jo Ann in this embrace is to see one of the beauties of human life. The mother gives the child life, then nurtures the child. through her breast, and the child returns for comfort, for solitude, for safety. The child returns to the life source. Makes sense.

Pablo has been in this position for over 24 hours. Once in a while he lets Mommy sneak out, and I jump in. Or Nana does. my usual position is to snuggle up behind him, creating a family cocoon. That's where I am now. I can't sleep, so I'm writing. That's what I do.

The nurses were kind enough to move the empty roommate bed where I slept last night next to Pablo's bed. Now we have a giant family bed, like we do at home, and we can be together as Pablo pushes his little lungs to do a job they were never meant to do: oxygenate his blood while one of the lungs is being strangled - nearly filled - by fluid.

Pablo's breathing is labored in the extreme. Laying next to him, he sounds mechanical, like gears grinding on an old car. His heart rate has been north of 150 for 24 hours. His heart has a lot of work to do to keep that system going with a troubled lung. By comparison, my heart rate is at 155-160 when I'm riding my bike at 20 m.p.h. on a flat road. And P's is that high when he's laying in bed. For sure, kids' hearts beat faster than adults, but not that much.

My head is spinning, so I'm not going to attempt to walk you through the medical details. The basics are: there's a massive amount of blood in the wrong places of Pablo's body. He lost an entire unit of blood in a 24 period. The origin of the blood can't be pin pointed, but it comes down to the tumor in the right lung growing massively or dying or eroding a blood vessel. The blood he vomited last night in the ER was the largest volume. Three smaller amounts came up today, the last of which was two hours ago.

Pablo is my best friend in the world. He is my son. He is Jo Ann's son. He is Grady's brother. He is a person who brings light and love to all who've ever met him, or spent time in the same room with him. He has lit our way since Jo Ann and I went to her doc's office and found out we were pregnant. Pablo is...a special kid. I love him so much that I can say without the slightest hesitation, I'd jump in front of a bus RIGHT NOW if it meant he'd be OK. I'd certainly shove his I.V. needle in my arm RIGHT NOW if I knew it'd cure him and kill me. F***. Those are no brainers. And they are great fantasies and nothing else.

The truth is, Pablo is dying.

There are no medical options left. Nothing can be done to better Pablo's condition without either causing further harm or simply putting us back at the same dim crossroads. Pablo's doctors never claim omniscience. When I asked them how much life Pablo may have left, the answers ranged from a couple days to a week. This internal bleeding stuff is irreversible and vicious.

Jo Ann and I have had a palliative care plan for a long time. Today is the day we had to enact it. The plan is simple: we want Pablo at home in his final stage of life. This afternoon, we sat down with Grady and told him the details of Pablo's condition. As a family, we decided to enact the home / hospice plan. It was the hardest thing I've ever been involved in. Yet it was so simple. It was all about heart. Logic was nowhere in the room.

Higher than our hearts is Pablo's: all three of us know Pablo wants to be home. In our bed, where he has slept since birth, where he has a view of his tree house in the back yard. With his dogs Chili and Beans. With his toys. Enveloped in the love of his family. Trust me, we don't even have to ask him.

Tomorrow morning, we will take Pablo home. Dr M and his colleague Dr Marcio and our case worker Patricia Rios arranged hospice care for Pablo. The woman who will lead our hospice is universally loved here at CHLA. We will meet her tomorrow and then she'll meet us at our home.

Two basic medical devices will be delivered to our home: oxygen and an I.V. machine that will drip morphine into Pablo's body. No meters, gauges or electronic gadgetry. Our focus is only on Pablo's comfort. He deserves to be without pain in his final days, no matter how many they may be. Pablo is a child. Children should not know pain. This child has known enough challenge, and has soldiered through it all.

Pablo has never complained. And if he had, who would blame him? Through chemo, surgery, radiation, endless appointments - Pablo has just sailed from all that crap straight on to happiness and smiles and fun.

I leave you with this image intentionally. Please hold up only your fondest, happiest Pablo pictures and memories. He deserves that too.

We ask that you pray for Pablo's comfort and serenity. No more fighting. That's all done. We have to elevate our game to get to where Pablo's at.

Again, never meeting your family I have been so touched by your fight for life. In the past few days I've been thinking especially about Grady and how he's so much a part of this journey yet not the center attraction. I'm sending extra good thoughts and prayers to him tonight.I continue to send my prayers and love and positive vibes to Pablo. I've requested that all that read my personal blog say a prayer tonight.

Through tears, I will pray my heart out in hopes of lifting you in prayer tonight. Pablo is blessed to have a family who loves and cherishes each other with each new day; this type of love can conquer all and keep you together for an eternity.

May our good Lord wrap His arms around you all, bringing you peace and serenity. May He continue to give you the strength you will need in the days ahead.

My heart is aching tonight as I continue the prayers for Pablo. Only those prayers are a little different now. I pray for peace for all of you as you continue to help Pablo on his journey. I am in awe of this sweet boy. Even though I never met him, he and your whole family have taught me how very important it is to savor all the sweet moments and be present in life. He experienced everything so fully. Please cover him in hugs and kisses from a family he never met, but still managed to touch so deeply.

My sweet,sweet family and my dear little Pablo:I love you all.I am blessed and better because I have been placed on this path,alongside you on this unimaginable journey.Tonight our prayers of strength come to you in great abundance.We ask God to cover you and keep you in His grace and may He carry you when you are most weary.We love you ...

May God give you comfort and strength to sustain you through the coming days. May you all hold each other closely and tightly as you once again put all you have into giving Pablo What he needs, this time peace and calm and comfort and love. And may you all support each other. We love you and hold the pictures of Pablo laughing and playing and smiling strongly in our minds and hearts. We are so blessed to have had him and you in our lives. You all are an amazing family.

I am humbled by the great love shared by your beautiful family during this arduous journey with the littlest of heroes, Pablo. How lucky he is to be wrapped in this cocoon of love. And how blessed you are to have him within, always. He continues to touch us all through your fatherly love and words. My family sends you our love, even though we have never really met.We also send prayers of peace to you all.

I hoped to never read a post like the one above. My thoughts have always been so positive with images of Pablo as he was last week for the next 50 years, smiling, laughing and happy.

No one can know life's plan when we are born. I can only say that Pablo was born with a special one. He has brought so much joy, hope and a better outlook to life to everyone he's met & those he never met.

Hi Jeff, I've been following Pablo's fight on twitter and I have to say that you have made me respect life and all that is good through your optimism and positivity. I have great respect for you and your family. Although I have never met you my thoughts are with you and your family during this difficult time. Respect, Josiah

im crying reading your words and clenching my fists at the same time... SOOOO NOT FAIR! DAMN THIS CANCER!!! I hate that you are all going through this hell right now. Sending such love and prayers your way. Pablo has touched me deeply in just reading about his beautiful and way too short life. Please hug him for me. Know that your precious son is loved by so many, that haven't even met him.

I am a friend of Heather & Zoey Needham. I have been praying for Pablo and your family over the past several months. I now pray for your strength and peace in the coming days, as Pablo makes his transition into Heaven. He will now be your angel. He will be healthy again, and with you always.

What incredible parents you and Jo Ann are. You are journeying through the absolute hardest thing a parent could ever be asked to do. And your choice to not fight and allow Pablo to continue to teach you is an amazing gift to him. I am humbled by your willingness to be present, I wish you continued Grace in this next stage of your family's journey, and I trust Pablo and his choices.

This will mean little if anything to you all now, but our love, prayers and thoughts are with you all. Much love amidst the confusion of it all. Please know that we are close, if not in distance, in spirit.

Im so stunned and saddened at this turn of events. Would a chest tube help relieve the fluid and provide P with some comfort? Just wondering. Lifting you all up in prayer and sending you much strength for this very difficult road you are walking on. Pablo is Love.

Jeff, JoAnn, and Grady, I can only imagine how painful it is to breathe now, along with little Pablo's breath. Just focus on one foot in front of another, one step at a time, one breath at a time. That's all you can do right now. Anything else becomes too overwhelming. I know, I have been there too. Remember to take time to eat, breathe, and as always, just spend your time loving on each other.

We have never met but I have been following your journey and praying for all of you...May you find the strength and peace you need to get through this painful time...May you feel God's strength and grace blanketing you...May Pablo feel no fear or pain but only the love that surrounds him. My heart aches for all of you. I will continue to pray.

Pablo is lucky ...to have such loving parents, a wonderful big brother and many many devoted and caring friends. Always know you have been the best daddy ever to this little boy, and know that taking him home and bathing him in your love and security is the greatest gift you can give him during this heartwrenching time. No father should ever have to say goodbye to their child, let alone watch them suffer. I will keep praying and lifting you all up during this intense journey of pain and love.

Thank you for letting us into your lives on this impossible journey. My heart aches and I can't see the damn keys to type. You gave Pablo the most incredible life, and let us come along. P will always have a piece of our heart, because you let us fall in love with him. Thank you for that. Always praying and keeping you and your family in our constant thoughts in RI.

We are so sorry for all the pain all of you have been through. You're in our prayers constantly. I'm so thankful Pablo had such a wonderful week last week. I'm also thankful that he and Grady have such wonderful parents. Love, Dennis & Dianne Gary

Your words to your best friend and son are heartbreaking. I admire the courage and fortitude that you are all showing, and hope that his passing is peaceful and beautiful, even though it's the last thing you want to have happen. I'm not a religious person, but I do pray that there is a soft, happy place for Pablo to land after he leaves this realm.

Jeff, I am so sorry...I have been reading your blog for a long time and have never commented...I am looking back at your older posts with the most awesome, smiling pictures of Pablo and remembering him that way, as you requested. But know that you are in my thoughts and my prayers during this time....God bless you and your family....

I have been staring at the comment box for some time now, trying to find the right words...I can't. My heart just broke.

Jeff, you are doing such a wonderful thing with this blog, sharing your family with us, your struggles, your moments of purest joy and elation and of course, your sweet little Pablo with the world. Everyday for the past month (since finding out about you guys all the way from out here, in Montreal, Canada) we have been checking in on the four of you and have found ourselves completely overwhelmed by love, by the kindness of strangers, by all the people who care, so many of which you have never met. We have never met you or your little man P., your friends or family but we are here with you, to share in your unimaginable love and grief.

Pablo is such a beautiful and quirky gift to you, to us, to the universe. He was born in the most loving family, to such wonderful parents, to the most devoted older brother, to kick*@@ friends and family. He is the luckiest boy to have you... and all that love. All that love...

I love that little boy, and I don't even know him. I love you guys and I will prey for all of you and keep you very close in my thoughts and prayers. I don't have any words. My heart is breaking. I want him to be okay. I want him to be able to play and run and laugh. He is a beautiful little boy and we are all so much better for having been able to share just a bit of his love and light, even if it was through this blog. Without ever having known him, he has changed me forever. I love you Pablo!

Jeff, I know you must be feeling such a sense of panic and fear right now, wanting more than ever to just stop the hands of the clock and just freeze time for the moment. No father should have to go through what you are going through right now. My heart aches for you , Joann and Grady. Please know that Pablo is loved by so many that have never even met him and we are all praying for his peace , serenity, and for any pain to leave his body. Keep loving on your boy, and giving him the sense of security that you have been providing him all along. Your love is the only thing he needs right now. I have a pit in my stomach right now thinking of your journey, and what is yet to come, sadly, I know all too well what you must be feeling now. I have walked in your shoes, with my own best friend, my boy. Keep writing if that will help you express yourself, let your emotions out, cry, scream, snuggle up with your family and breathe in these precious moments. You and Joann have certainly given Pablo your all on every level possible. I hope you take some comfort knowing that you have made that little boy very very happy. It clearly shows in all of his beautiful pictures. You will always be his Daddy, never forget that, whether here on Earth or in Heaven...and one day we will all be reunited again..of that I am convinced ...and it brings me much comfort knowing and believing that. I hope it does for you as well. xoxo

I just found your blog. Last October we (my husband and I) made the very difficult decision to let our youngest son, after complications from heart surgery - severe CHD, go to Heaven. It was SO difficult. and we STILL love and miss him so much.I'm praying for peace for you family and God's comfort.

I am completely at a loss for words. Not that words could change what is happening right now anyway. My head feels dizzy and my heart is in such deep pain. I am literally in shock! I will not let up on my prayers and will still hold onto hope, blind as it may be right now! I pray you all are wrapped in love and know how many of us are loving on you even though we've never met in person! Pablo is so very awesome! He continues to teach a whole world how to live! And for that, we love him dearly!

Peace and serenity to you Pablo. You are the strongest little boy in the whole wide world!

My 5 year old son, Aiden, and I said a little pray for Pablo last night, as we went to bed. I am so heartbroken. After following your story and feeling your incredible love for your son, I feel I knew him. I wish this was just a dream.

Love to you Jeff. And your family - Joann & Grady. . . And Dean and all.

Jeff and family, through tears, I want to let you know that Pablo is an inspiration to me and my family. A sweet, little boy whose life means so much to people that have never even met him. My kids wear the Pablove bracelets and I talk about the updates on Pablo to them. Pablo is a sweet gift to us all and a reminder that life is a gift that should not be taken for granted. Our thoughts, prayers and love are being sent to you and your family. Beth

Before we have children we think of perfection in different terms. A perfect game, a perfect day, a perfect performance. Once we have children our definition changes. Perfection is the laughs of a child running across the lawn, or a simple smile, or the chocolate all over their face.

The ultimate perfection is the love that a family shares. Take comfort and solace in your family love. It is the most perfect thing ever to exist and it will always be with you wherever you go.

I don't think I slept a wink last night. I read this late...before bed and just laid there stunned. I really wasn't expecting to hear this at all and I have no idea what to write or how to respond.

Like many others...my husband and I are readers from afar who have never even met you, yet wear our Pablove bracelets with much pride and check in on him often. You all have touched our lives in a profound way. All I can do is wish you peace during this time and let you know that I am thinking of you all. Pablo will always be with you and let's hope that someday you will be reunited in a beautiful place.

Well you've all been in our constant prayers, but the focus now changes a bit. We pray for inhuman strength and calm for you and Jo Ann and Grady. We pray for peace and serenity for Pablo who has taught so many so much and didn't deserve the burden of doing so.

I'm so glad that Pablo was born into your family and never had to doubt for a minute how much he is loved and cherished.

Through tear filled eyes, I search for words but cannot find any. My family never had the honor to officially meet Pablo but through your wonderful posts we feel like we know him. Having worked with JoAnn at Esprit, I knew that she would beome the wonderful mother that she is. You have taught me to take nothing for granted not even the smallest, most mundane tasks. Please know that you have more people on your side praying for you than you'll ever know. Much love to you, JoAnn and Grady.

it is through tears that i type...thank you for blessing us with the opportunity to fall in love with pablo and your whole family. you have touched my life in a way that has changed it forever. i am praying for peace and serenity as you continue the journey.

I see Pablo running down the hall on 4 west....smiling, laughing all the way.Thank you for letting me into your life and sharing your journey with all of us. My heart is aching for you right now. I pray for peace for my sweet P and strength for you, Jo Ann and Grady.With Much Love, Danica

I wish to offer up my love and prayers of strength and peace to you and your family. You are doing what no parent in this world should have to do ... but what we do best. Loving our children...through the best and the worst. This, as I can only imagine, has to be the worst.

I love you all and feel blessed to have known Pablo for the brief moments that I did. For the past year not a day has passed that I haven't thought of each of you and how much your journey has inspired me. In some way, it has given me courage to meet life in a bigger way that I had been. I can't tell you how many times the thought crossed my mind, "If Pablo can do it, so can I." Mostly it's about learning to live in the moment, which is all any of us has, and which you each have demonstrated to me in the most profound way imaginable. You're truly one of the most amazing families I have ever known and my heart is overflowing for you right now.

I am just sitting at my desk, not able to do anything, helpless. I wish I could do SOMETHING -- something to take the pain away, to change things, to make this all better. But I can't. And for that, I am so sorry. Your blog has introduced your sweet Pablo to people who wouldn't otherwise know him and he will continue to shine as a bright light in all of our lives. My heart is with you during this difficult time. Love you, Lisa

I sit here weeping at your post. I had so much hope and joy in the last few posts seeing that the treatment was working. To read this today, is beyond words. may you be able to have Pablo home, be together as a family, with a sense of peace for you all.

Nothing much more to be said. My mind pretty much goes blank when I read your posts, especially this one. I have no way to comprehend it, no way to fit it into a place in my head where I can make sense of it. And it's your pain as a Dad that overwhelms me. Be strong for him now as you have been throughout. Let him be calm and without pain. Let him see the tree outside his window. I am sorry Jeff. My hugs to all three of you right now, and a special piece of energy to Pablo.

I have no words...only tears right now as I read your post. Please know that I am crying along with you, and praying for peace , for Pablo and everyone close to him. He is truly a special boy and we are all blessed to have known him. I will always remember him as that adorable bald headed, bright eyed, "pirate running the halls of 4West"

Thank you for sharing your journey and may we all be reminded how tender, fragile and intense life really is. I'm in awe of your stoic and loving approach to what must be the most scary, sad and surreal moments in your life. You were all so happy such a short time ago and the tables turned so quickly, just too hard to fathom. To bring a life in this world and not have him around is something only a parent that has crossed that threshold really understands. It reminds us to love on our children even more. Your baby loves and needs you more today than ever. And I pray and pray for serenity.Pablo will always live in my heart and soul, and I have learned a lot from him, thanks to you.Peace,Cindi Peters

The Pablove Foundation sticker is under my computer at work, reminding me all day of the beautiful spirit of Pablo. Your special gift of a son has inspired so many of us. May God bless you all with strength to see you through this time and may he keep Pablo in a warm embrace of comfort. Pablo's spirit is eternal - how lucky are we for that truth.

My thoughts, love, and prayers are with you and your family. We have never met, I heard about Pablo when my friend Jeff sent out a call through Facebook for prayers for him. Since that time, he has been in my prayers. Just in the last few days I had thought about writing Jeff and asking how Pablo was doing. I wish there were something I could do to help and ease the pain. I am thinking of you and your sweet family.Sara in Alabama

Knowing that Pablo will be taken care of... I am sending you all so much Love and Peace. I hold my visions of Pablo running with his long curly hair bouncy and his great big smile so strong in my heart.

Am so sad to hear you're sailing rough seas as of now. But your Pablo is such a strong little fighter. He'll make it one way or the other. I almost lost it when a Korean friend of mine died from forced malnutrion, When my best pastor friend died and my mom had to break the news to me, i could just sit there in shock. I honored him on Father Day, his B-day, celebrated my 100 yr annes. with him. Hugs and love to your family.www.caringbridge.org/visit/sarahnixdorf

I am deeply saddened with this but with strength and hope and love, I pray you and your family and especially Pablo that you can all find the best moments together. Through your blog, I've learned to fight... thank you for showing us what love is. It's a beautiful gift you have given all of us and I want you to keep doing what your doing.

My heart is crushed as I read your words. I am beside myself with grief for a little boy and a family I have never met. I have been reading your blog for the last few months - hopped over from safe-haven-blog.blogspot.com and just stayed around. I have smiled and cried and laughed out loud at your posts and antics of Pablo. My heart has hurt for what you are going through. All along I have prayed for complete healing for Pablo.

Today, I will shift as you have requested and pray for peace and comfort for him. I will still pray for complete healing.... and I will pray for your complete healing and peace and comfort: you, Jo Ann & Grady.

Father, would You do the impossible and heal Pablo completely on this earth? I know it would take a RADICAL miracle, but I also know that You are into that sort of thing. Ultimately, I know You alone are God, and I submit myself and my desires to You.

Lord, would You bring comfort and peace that passes all understanding to Pablo and his family right now? God, be with them and strengthen them! Shine Your light, Jesus! YOU are the way, the truth and the life... no one can go to the Father without You. Let Your presence be thick around them. Draw this precious family into Your arms, into Your embrace.